Oculo-Auriculo-Vertebral Spectrum

Work in Progress. Check back soon.

Reflections Contest....................1st PLACE WINNER

Rachel has taken piano lessons off and on for about 4 years...more off then on. This past summer we found a new piano teacher after taking a year off who writes her own music. Upon finding out Rachel has written her own music, Leda McCullough took it upon herself to help refine Rachel's talent to our utmost pleasure. Leda helped Rachel record one of her compositions, so that she could turn her song into the Schools Reflections Contest. Rachel was completely shocked to find her self holding not only a trophy, but winning 1st place for the 9-12th Grade. She is the youngest to turn a song in and get 1st place.
Rachel's Story: I was in one of my classes at school when the intercom came on and asked for me to come to the media center. I was surprised they were calling me, because I had never in all my years been called down to...well...anywhere. I picked up my stuff and went to the library and when I got there, there were lots of other kids. There was a staff member who came up to me and asked if I was Rachel. I said yes and he brought me to a table where there was a trophy. The teacher picked up the trophy and handed it to me. He congratulated me and told me they really enjoyed listening to my music piece. I then took my trophy and headed for my locker so it wouldn't get broken as I went into Lunch. As I walked to my locker I finally looked down and read the writing and had to stop myself from screaming as I realized I had taken 1st place. I hurried to put it in my locker and as I put it inside my locker, the lunch bell rang and I did a little scream in my head as I was late and headed off to lunch feeling pretty ecstatic.

Introducing my Family

This is my family as of August 2010. John and I will be married 17 years this coming February. It still blows me away at how fast the time has flown and all of it very good. We have our struggles, but who doesn't. What matters to us in the "lean years" is that we are both committed to each other and our family.
John is a computer tech working from home. When we have a computer problem, we are SO glad that he knows what he's doing. John loves to learn about anything and loves to work with our kids. John hates watching movies without the remote to fast forward the "slow" parts (thus, I don't watch movies with him unless in the theater). John has many friends and makes friends easily. He loves talking to them on the phone and I usually have to put his phone in "time out" so that he can get some work done.
I work as an aide at a local hospital working on their surgical transplant floor. I love meeting the patients and working with the staff. One day I will finish school, but I have loved being a stay at home mom and don't regret not having those years with just my kids to worry about. I play the piano (hence the title of our blog), but don't teach my own kids. I have been working on improving my skill and enjoy playing the Organ for church and the Piano for the Choir to nudge me along.
Rachel will be 15 this coming January. She is a great big sister. She loves to tease and pester, but in the end she is such a help with house and siblings. She loves to play the piano and to create her own music. She also plays the Clarinet and is hoping (hint hint) to learn to play the flute.
Sarah is 11 1/2 years old. She is the first to get others to laugh. She is outwardly caring towards others. She loves giving and receiving hugs. She also plays the piano and after a bit of practice can pretty much play anything (simple) that she hears. She also loves to sing. She has such a beautiful voice, but can be a bit shy about it in front of others.
Karl turned 8 this past August. He was SO excited to be baptized a member of The Church of Jesus Christ of Latter-Day Saints. It was the only thing he talked about for the last year. He loves reading his scriptures and making sure that we all read as a family (not that we weren't without him). He loves gymnastics and practices his piano so that he can continue (that was the bargain). He does play the piano real well...when he practices. He picks up learning the concepts very fast. He loves playing with his brother and for the past year has insisted that they have a bunk bed and share a room. I finally relented this past summer. I don't know why I bought the bunk bed as they spend more time sleeping in the same bed than their separate beds.
Hyrum will be 5 in March. I don't know where the time has gone for him especially. He is the main reason for my starting this blog. And the main reason I have been bugged by others to start a blog. Hyrum was born with what is called Oculo-Auriculo-Vertebral Spectrum. In English, this means he is not symmetrical. I will go into details later on as I don't want this particular post to be THAT long. But he is a great addition to our family. He loves to laugh, learn, and play with anybody. He knows his letter names and sounds, his colors and shapes. When driving, you can drive to the store and he can get you home with no help. He rides the bus to and from school and as we drive to the store, or elsewhere, he will tell us where everyone that rides the bus with him lives.
That is our family!

Why I started to blog?

My name is Jennifer Smith. I have been bugged for years about starting a blog. I was nervous about putting my life out their for others to read about. I have since learned that maybe, just maybe, someone may look at my story and realize that they are glad for what they have. I am not looking for pity or sympathy but more support to others. And of course along the way it would be nice to gain some sanity from writing. Every one tells me that this will help to realize that yes this is my life and do I really want to change it? For if I were to change my life what would I be forced to give to up in the process. I don't want to give any thing I have or have learned, so I keep my trials also!

This is Life

I have had a hard time moving farther into the future at this point.  I have pondered why that was.  And the reality of the situation is mostly due to 2 things.  1) The struggles changed but did not end 2) The struggles have been hard to think through long enough to write about.

I decided to set the "schedule" to the beginning of the post as it will make more sense that way.

I hope to add more at some point, but for now this synopsis will have to do.  After Hyrum's take down surgery at the age of 15 months in June 2008, we spent the next year getting Hyrum to start sleeping through the night.  By the following January ish, I was struggling with my own health due to lack of sleep and diet.  It's amazing how little you eat when your tired.  John started seeing the "signs" that his job would not be around too much longer.  This did not help the stress level.  At the insistence of both my mother and sister, John hauled me off to Hawaii for 3 weeks, where I pretty much slept the entire time.  Hyrum was doing well enough that we felt we could start to travel with the kids and had decided to go to Disneyland sometime in 2009.  We presented the price to the kids and they decided that they would rather take the money and visit family.  So in July, I took the 4 kids and my parents (John stayed behind to work) and we spent 3 weeks visiting Jonathan, Martha, Palmyra, and other LDS historical sites along the way.  A month before this vacation, John sat me down and explained that his job would be gone by the end of the year if not sooner.  I still could go on this vacation, but to know that the money could give us a month worth of wage to live off of.  Having struggled with depression and (mostly) lack of sleep, I felt that I needed this vacation to visit my siblings before the "storm of life" hit our family.  I still to this day do not regret this vacation.  It was so needed for me to feel my siblings love for me in person.  It was a turning point in my personal outlook and health.  And Hyrum for his part did great for his first road trip. 

By fall, I decided to get my Certified Nursing Assistance Certification (a 2 week course) and by February 2010 I started working at a hospital in Salt Lake on their Surgical/Transplant floor.  By this time our savings was gone.  John was attempting to start a business with a colleague, but the market took a nose dive and it was not looking good.  I was working 60 hours a week or 5 nights a week to keep ourselves afloat.  By August, John got his first contract.  It wasn't a lot, but it was enough that I was able to move back to 3 nights a week. And within the year, he got a second contract the enabled me to move to 2 nights a week...just enough to keep the health insurance going.

In the fall of 2011, John received a huge spiritual blow when he was reprimanded for not supporting his local church leaders.  This started by unneeded lies about John, that we are grateful that our Bishop sided with us and helped us through a difficult time that still effects John horribly.  We finally had enough of being around these people, so when the opportunity arouse we moved from Lehi to West Point to be closer to family.  This was a hard move for all of us.  Rachel didn't want to leave her friends, but was excited about a Charter School she would be attending, Sarah was very upset to be leaving her friends and in fact almost flunked 7th grade to "spite" us, she has since found new friends and is getting wonderful grades in school.  Karl had the hardest time as we have decided that he does not do well with change.  We didn't find out until later, but he had a difficult time with bullies at school.  We are glad that he was in shape and (unfortunately) did a great job at defending himself until the kids left him alone.  Hyrum did the best as he was so glad to live so close to grandparents.

Shortly after the move, I decided I had enough working the floor and when the chance came to work as a Clerk on the same floor, I was cross trained and enjoyed doing the paperwork end of the floor.  I was getting tired of working with the patients.  They seemed to be getting harder and the hospital was demanding that we had more patients at a given time.  As I was working on my house, I found my body could not do both.  This became a relaxing time for me as I was able to sit and do paper work instead of running around dealing with patients.

In looking for housing, we decided that living within walking distance of one of our parents was the most important thing, so when a house came up close to my parents we jumped at the house (especially since not a lot of houses go up for sale in that area).  The house though was a dump.  We (mostly me) spend 9 months replacing walls, the kitchen, bathrooms, floors etc. I have posted pre- pictures if you look for them.  The house was a huge stress for John, as it was smaller than our Lehi house which we felt was already too small.  But our 2.6 acres helped give John a place to distress.

After commuting to Salt Lake through one winter, I decided to finally transfer hospitals.  So in November of 2013, I started working as a CCT (Critical Care Tech) in the ER at McKay Dee Hospital.  The change was extremely difficult as I realized that I'm not much different from Karl and I don't like change very well.  I have worked hard to find new friends and to find my place in my new work settings.  I am surprised with myself, growing up I never wanted to be in a medical career, and in fact was told I wouldn't do well in the medical career.  But I have learned that when it comes to real life, I don't have a problem jumping in and getting things done.  I am thanked constantly for my compassion and empathy with my patients.  I do not mind working with the patients as the turn around is much faster and I don't have to bathe anyone.

I would never have put our life where it is now.  I would have never guessed that we would be struggling financially, spiritually, I'm exhausted all the time.  The kids are growing fast, and I feel that I am missing out even though I only work 2 days (or sometimes nights) a week.  I feel a unrest, but yet every time I pray to fix this, I feel that I am where I am supposed to be.  How is that possible to feel that I'm not where I should be, but yet feel so much peace at where I am.

It was stressful watching Hyrum go through his struggles, but the last 5 years have been so stressful in other areas, that I feel very overwhelmed.

Jennifer's 7'4" Baby

This story has nothing to do with Hyrum, but more the introduction to my next baby that came 7 1/2 foot long. This story will also explain how I came up with the name of the blog.

6/7/2008

Well, John got me good. Our living room is no longer! There is now a beautiful black beauty that currently takes up 90% of our front room!

Before Hyrum went into the hospital, we were looking at pianos. We decided to stop looking as the day for surgery approached and the stress of looking became unbearable even though I had found a piano beyond words, we had decided to pass on it anyway.

John knowing that I already loved this piano and found that the chances of coming across anything similar were slim to none, and with a buyer flying in from Texas on Wednesday took it upon himself to work with the dealer and make all the arrangements. The piano movers left the house about the time I left the hospital to come home. Talk about him cutting it close!
I had NO knowledge of anything that John had been doing all week long. So when I arrived home...I was VERY shocked!!! I cried for about 10 min. all the while the camcorder sitting on the table in the kitchen was recording. Later when I watched the recording I cried again! It was an extremely pleasant surprise.

So for those who don't know pianos, we bought a 7'4" Grotrian that was 20 years old. Pianos are broken down in classifications 1 through 4. With over 70% of the pianos in category 4, about 20% in category 3, about 9% in category 2 and about 1% in category 1.

Category 1 has the likes of Steinway & Sons New York at the bottom of the category 1, Bossendorf somewhere near the top with Grotrian in between. Yeah, a piano that is better than a Steinway & Sons New York! Cool!!!

Hyrum's Take Down Surgery #15

For what ever reason, I'm missing a surgery. So yes, I do know how to count, I'm just forgetting one. It was probably a radiology sedation back in September/Octoberish.

May 31, 2008

Just making sure that we are still on for Hyrum coming in on Sunday for his bowel clean out and for surgery on Monday. I usually get a phone call on Friday's when surgery is on Monday. I didn't completely expect a phone call as I will be admitting Hyrum on Sunday, but I just wanted to make sure we were all a "go". Hyrum is doing great...and is now crawling on his belly inchworm style across the room!

Here is a picture of Hyrum in his walker! His next favorite thing to do!

I am out of town at a meeting but I called to OR and he is on the schedule. Not sure why you did not get the confirmation. I guess you would need to come into the hospital abt 1PM so he can get started on his bowel prep. I am planning on laparoscoping him first. See you then-

Earl C. (Joe) Downey MD

May 1, 2008

This is to let you know that we have arrived. Hyrum has toys to play with and has adjusted (as much as you can) to life in the hospital. Hyrum's surgery is set for tomorrow (Monday) morning. I will keep you posted on how he is doing through out the week.

Sarah's baptism went great and we had an enjoyable time with those that came. The kids are all with Grandma this week. And both Grandma's are getting to take time with them, so that will be fun for the kids to start their summer out!

I would also like to thank those that have been/are/will be praying for us. It means a lot to us to know that we have so many people thinking about us and especially Hyrum at this time.

Hyrum is doing well tonight. We have been promised a rough night tonight. He has been on a clean-out stuff for a few hours. And his stool is very runny, they will now be doing enemas on him every hour or so until it starts coming clear. They also have to do enemas on his lower half of his intestines to make sure it has no mucus in it.

We just got done with the first installment. It wasn't too bad, and he didn't complain too much about it. He was poked 5 times before they got his IV in. His poor veins are so small that even the best of the best have a hard time getting an IV into him.

Well at midnight we get another round of the enemas and will continue until it runs clearly, then they leave him alone.

His surgery is planned for about 12:30 tomorrow afternoon.

May 2, 2008

Well, Hyrum is out of surgery. It has been a long day. He is now comfortable in his sleeping with a little blow by oxygen.

Yesterday, Hyrum received a tube from his nose to his stomach to fill him up with a laxative to clean out his bowels. They gave this to him over a 4 hour period. During this process, the IV team came in with their fancy equipment and finally got an IV in on the 5th try. He was mostly happy and content throughout the rest of the day. Last night at 11 pm, they started doing enemas on both ends of his intestines...through his stoma (where he has been stooling) and through his rectum. This process helps to give a final clean out of anything that might be left inside. They did this at 11 pm, 12 midnight, 6 am, and again at 10 am. He spent a few hours playing on the floor and then napped after the 10 am clean-out. After which we roamed the halls in a wagon, in arms, or (his favorite) daddy's shoulders.

Hyrum then went into Surgery around 2 pm. We made it back to the room by 5:30 pm. He is doing well, but fully maxed on pain meds....but he has not red lined it so that is even better. He desaturates a little, but this is normal for him after surgery.

Though the night is young, I know that most people are anxious to know how everything went.

Hyrum going for a wagon ride!!! LOVED IT!!!
Hyrum playing on the mat this morning about 8 am...notice how happy he is...at this point he had gone 21 hours of no food.
And the final picture is right after Hyrum's surgery. Notice his stomach. The large bandage is where his stoma and mucus fiscula where. The smaller bandage is where they scoped him to make sure everything was good inside of him before they closed him up!

Hyrum is such a trooper. He just amazes me with his attitude and his ability to deal with his life. Yesterday they put a NG tube down him to put the medication straight in his stomach (it is real nasty tasting and he had to drink a litter in four hours time). He hasn't eaten anything since yesterday at 11 am. And he has had 4 enemas so far. one at 11 pm, 12am, 6am and 10am. He will probably have at least one more series. His surgery is scheduled for 1pm, but they are already behind and it will be more like 2pm. But he has already gotten down on the mat to play with his toys, and gone for a wagon ride around the unit. He only complains when they "torture" him with the enemas and other than that he is happy and wants to play! After the enemas I have them wrap him in a warm blanket. This helps him to sleep for a while (which is what he is doing now). He is such a happy child, I don't think any of my other kids could stand to go through 1 day of his life. But it really affects them to watch him grow and still be able to laugh. Though they still fight, they have a new reverence for life and for each other.

Grandpa Burrell (Jennifer's Dad) came to visit and give Hyrum a hug.

This will be (hopefully) the last on his gut. They are closing up his intestines so that he can poop normal. Next Monday he will go in for an MRI of his throat to see why he is not able to swallow chunky foods. This may result in another surgery in the near future. In August, he goes in for another x-ray of his spine. They are watching it for worsening scoliosis. From there his next planned surgery won't be until he is about 5 years old on his ear.

He has a curvature of 36% in his spine so yes he has scoliosis. They are watching him to see how fast the curvature is changing or staying the same.

If he stools in the next 48 hours, we won't know who well he has control until he is ready to potty train. If he doesn't go, then he will be on the needing an enema to go side.

May 5, 2008

Grandpa Smith came to visit and give Hyrum a hug.

I am truly amazed by this little boy that has graced my home! This particular hospital stay has really been the best and easiest for him. They are already talking of sending him home later today!

HE HAS A POOPY DIAPER!!!!!!!!!

more details to follow!!!!!

Ok So I have one awesome story. As Hyrum was taking a ride in his wagon, he ended up running into a mass of people and news people. I was wanting to go through them to the piano on the other side of the crowd, but was stopped by someone from the hospital asking if Hyrum would like a stuffed animal. He had yet to smile(reason for heading to the piano), so I thought this toy might cheer him up. He loved the stuffed animal, but another gentleman from the NFL Blazers came and asked if it was OK to let Hyrum say hi to the mascot. I was skeptical that Hyrum would like this, but agreed to it. Hyrum loved the attention!!! And I looked up to find myself and Hyrum surrounded by the camera crew! They took about 2 hours of film of the mascot saying Hi to other children, but Hyrum seems to be the only one who made it to the news!

If the download doesn't work, here is the link to the news.
http://www.ksl.com/?nid=294&sid=3469394

Enjoy

So dear friends and family,

As I was changing Hyrum's diaper this afternoon, I had to do a double take as there in Hyrum's diaper was poop! I yelled for the nurse and got 5 nurses at my door! I turned and smiling said "I have a poopy diaper!" Laughing everybody went back to work, but very thrilled for Hyrum as this meant he got to go home! I was discharged within the hour! I have since changed about 5 diapers!

Hyrum was very excited to go home. When I showed him his clothes he laughed very giddy like and clapped his hands!

Yesterday, while talking with my mom, she relayed a story that I would like to share with you. Tuesday morning, Rachel (my 11 year old) refused to have breakfast. My mom found this to be very odd, but did not push her. Later on, Sarah spilled the beans and told Grandma that Rachel was fasting for Hyrum to get better. Now remember Tuesday, he was still on full pain medication all day long, he was not allowed to eat, but he slept for the full day with minimal wakings (only for more pain meds). Wednesday morning, it was a complete turn around. He was off oxygen completely, he wanted to sit up and play for a few minutes, he even went on a ride in the morning, though he was fairly tired through out the day. So as I relayed how well Hyrum was doing, my mother in turn told Rachel how well Hyrum as doing, to which Rachel responded, "Fasting does work and Heavenly Father does answer questions" What a wonderful experience for her to learn such an important lesson!

I think this is one of my favorite faces that Hyrum makes. The one eye brow raised, with that "Oh ya" expression!

Most baby's don't like riding in their car seats. I think all would agree that this is NOT one of those times. With that tongue sticking out it says it all "I'm going home!"